A native San Diegan's view of technology, journalism, science, politics and anything else that interests me. The inevitable disclaimer: This blog represents my personal views, not those of my employer, the North County Times.

Sunday, February 03, 2008

Click on the title link to comment on the current Festering Swamp post. We've had repeated troubles with Journalspace this weekend, so I may set up a mirror on this under-utlized blog.

Below is the post for Sunday, Feb. 2:

British deaf rights organizations want to give parents the right to choose deaf embryos from in-vitro fertilization. That eye-opening news comes courtesy of gold bug/dancin' fool and witticism king allan, who checked in to the comments section to give the news. The writer allan quoted likened the proposal to Blade Runner, where genetically altered humans called replicants were created for the amusement of normal humans. From allan's newsletter:

"Right now, in the U.K., a pair of deaf-rights organizations — the Royal National Institute for Deaf and Hard of Hearing People and the British Deaf Association — are lobbying to give deaf prospective parents (and presumably, hearing parents as well) the right to genetically engineer deaf children. Their efforts are focused on amending a bill currently passing through the legislative process in the House of Lords, the Human Tissue and Embryos Bill, which currently would prohibit the screening of embryos for the purpose of choosing one with an abnormality. According to the U.K.’s The Sunday Times, a broader coalition of organizations representing people with disabilities will also begin campaigning for this amendment to the bill, starting this month."

Some deaf parents would rather have deaf children, the rationale goes, as explained in the Sunday (UK) Times, so they would fit better into the household.

A clause in the Human Tissue and Embryos Bill, which is passing through the House of Lords, would make it illegal for parents undergoing embryo screening to choose an embryo with an abnormality if healthy embryos exist.In America a deaf couple deliberately created a baby with hearing difficulties by choosing a sperm donor with generations of deafness in his family.This would be impossible under the bill in its present form in the UK. Disability charities say this makes the proposed legislation discriminatory, because it gives parents the right to create “designer babies” free from genetic conditions while banning couples from deliberately creating a baby with a disability.

Technically speaking, this won't be genetic engineering. The embryos are not being altered. Generally speaking, IVF creates multiple embryos, and only one usually gets chosen. But we are already edging close to outright genetic manipulation. The Times article mentions a case where an American deaf couple chose a sperm donor whose family line has a history of genetic deafness. I'm reminded of the Ellen Jamesians from The World According To Garp. The novel describes the EJs as a group of radical feminists who react to a girl being raped and having her tongue cut out, by cutting out their own tongues.

Is that analogy fair? I can imagine how some deaf-rights advocates must feel about the current IVF standards, which call for discarding embryos with abnormalities such as deafness. Could that be viewed as a form of genocide against the genetically deaf? But is choosing an embryo that has a genetic defect, merely for the convenience of the parents, morally right? For that matter, is choosing to abort a fetus (or not implant an embryo), with a genetic defect also a case of convenience for the parents?

Rabbi Joseph Eckstein pioneered an entirely new approach to Tay-Sachs disease in 1985, in light of the fact that he found all the available options either unappealing or irreconcilable with halachic (Jewish) law. His solution: to eliminate the gene from the Jewish population entirely. Eckstein is the founder of an international genetic testing program called Dor Yeshorim, the "generation of the righteous." In the program, Orthodox Jewish high school students are given blood tests to determine if they have the Tay-Sachs gene. Instead of receiving direct results as to their carrier status, each person is given a six-digit identification number. Couples can call a hotline, if both are carriers, they will be deemed "incompatible."Individuals are not told they are carriers directly to avoid any possibility of stigmatization or discrimination. If the information were released, carriers could potentially become unmarriageable within the community. During 1993, 8000 couples were tested, and eighty-seven couples who were previously considering marriage decided against it as they were at risk for having a child with the disease. The program then, aims to eradicate the disease through the venue of choice of mate.Jewish writings contain references to genetics and eugenics as far back as the Bible and Talmud. In Jewish law, it is prohibited to "marry a woman from a family of epileptics or lepers lest the illness be transmitted to future generations." Avoidance of genetic disease by choice of mate has been accepted since the biblical era. Do the Jewish ancient writings thus indirectly sanction the approach of Dor Yeshorim?

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